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This form of the disease is uncommon affecting about one in 20,000 people.

They had to log enough hours to show the nurses they were capable of caring for him outside of professionals care.'We had to get over that fear of using the equipment,' Lisy said.Doctors removed both of Ismael's kidneys, implemented a feeding tube and started him on dialysis, which he would continue to need for the next seven years.But while the family waited for him to grow big enough to handle adult organs, more complications arose.After being born premature at 33 weeks, Ismael was in the Natal Intensive Care Unit where he remained for nearly two months and suffered two strokes, high blood pressure and renal failure.By four months old his kidneys were growing faster than his infant body causing problems with breathing and eating.